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7 months post Methotrexate and still in pain?!?

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aeluned
Posts: 2
Joined: Mon Oct 10, 2016 11:30 am

7 months post Methotrexate and still in pain?!?

Post by aeluned »

Hi all,

It has been over 7 months since my methotrexate injections, and I'm still in pain :cry: My due date is approaching and I find it really difficult to move on whilst still in pain. Here is a summary of my story (I apologise even the summary is long)....

03/09/2016 - Positive pregnancy test, calculated that we were 5 weeks pregnant.

04/09/2016 - I did another pregnancy test just to be sure... still positive! Later that day was when I started presenting pain on the right side in my lower back/pelvis

08/09/2016 - I started spotting. My partner took me to a&e and we were referred to EPAU for the 13th

10/09/2016 - the pain in my back started to get worse, and my right buttock and leg began the go numb, I was also still spotting.

12/09/2016 - I started bleeding heavily and found it really difficult to walk or sit and started getting shooting pains down my leg as well as the numbness.

13/09/2016 - we went to the EPAU. Internal Scan showed no sac, and my hcg was low for that of someone who was 6w3d. We were told I was most likely having a miscarriage and to come back in 48 hours for more blood tests. Symptoms remained the same.

15/09/2016 - my hcg had dropped slightly, miscarriage was confirmed. Asked us to come back in a week. Symptoms remained the same.

22/09/2016 - bleeding had stopped a few days earlier. Pain was worse, especially in right leg. My hcg had risen which was when Ectopic pregnancy was suspected.

24/09/2016 - hcg had risen but wasn't doubling.

25/09/2016 - hcg was still rising, internal scan and abdominal scan showed nothing. I was told I had a pregnancy of unknown location.

26/09/2016 - hcg still rising, still nothing on internal scan. They decided that Methotrexate was the best option, so I received my injection that afternoon.

27-29/09/2016 - on top of everything else I was now extremely exhausted, lightheaded, nauseous, aching and had chest pains! I was also experiencing mild abdominal pain (combination of MTX and pain relief).

30/09/2016-01/10/2016 - I also started having discomfort while going to the toilet. Abdomen pain started getting worse.

02/10/2016 - I was in excruciating pain in my lower right abdomen. Rung hospital, they said it's probably the Methotrexate working.

03/10/2016 - I was in hospital all day as I was in such a bad way when I got there for my blood tests. My hcg hadn't dropped. I had another abdominal scan which now showed I had a 33.5mmX35mm cyst on my right ovary which they thought might be causing the pain. They decided to leave it another week to see if the MTX would work.

04-07/10/2016 - MTX effects started to wear off.

08/10/2016 - began bleeding. Still experiencing pain (on the right side) in my lower back, ache/numbness in leg, lower abdomen but it was starting to subside.

10/10/2016 - hcg had dropped significantly.

17/10/2016 - hcg still dropping. Told them that I was still in pain in my back, leg and abdomen and I was advised to go to physio.

19/10/2016 - Physio couldn't find cause for my pain, and suggested I go to the GP to get referred for an MRI.

24/10/2016 - hcg was finally low enough to be discharged. I asked for advice on my ongoing pain/cyst and I was told no follow up appointment would be needed and that the pain should go away once I've recovered fully and cyst will go away on its own.

29/11/2016 - I went to the GP as I was still presenting on going pain in my lower back on the right side, and had a constant ache in my right leg. I also noticed that the pain got worse during my first period and had sharp pains in my lower right abdomen. I was prescribed more pain relief and told that the cyst wasn't a concern.

06/12/2016 - I went for a private consultation , and was referred for an ultrasound scan.

22/12/2016 - I had an abdominal ultrasound.

29/12/2016 - the results of the scan were satisfactory. The cyst had gone and everything else looked normal (to my disappointment as I wanted answers). I was told the body can take a while to recover, and to leave it another month.

07/02/2016 - I contacted the consultant to say that I was still presenting ongoing pain. I was advised I needed an NHS consultation to be referred for Laparoscopy.

08/02/2016 - went to the GP and was referred to gynaecology.

29/03/2016 - had my consultation and was referred for a Laparoscopy.

I'm still waiting for a Laparoscopy.... I'm told I could be looking at mid October before I get seen :(

I have had a constant pain in my lower back/pelvis (right side) and ache/numb like sensation in my right leg, which gets worse during my period and ovulation. During ovulation I have sometimes experienced excruciating pain in my lower right abdomen, which has left me bed bound. I also some days get sharp pains in my lower right abdomen and there is also discomfort when my bladder or bowel is full. I didn't experience any of this before I got pregnant, has anyone gone through anything similar and can offer some advice?

EPT Host 20
Posts: 3176
Joined: Thu May 31, 2012 10:58 pm

Re: 7 months post Methotrexate and still in pain?!?

Post by EPT Host 20 »

Dear aeluned,
I am so sorry to hear of your ectopic pregnancy and loss and your continued pain.
I am glad you have sought medical advice but again sorry you are waiting so long for further investigations and hopefully answers.

Experiencing some pain after an ectopic pregnancy is normal as your body has been through a great deal. The pain may be due to adhesions (scar tissue that binds two parts of the body together) which form and take some time to settle. Your body may be preparing to ovulate and many women experience ovulation pain when they did not before their ectopic pregnancy - including myself. You also may have a heightened perception because of the sad loss that you have had to go through.

If you aren't already, I would advise keeping a diary of your pain, especially in relation to your periods. If you are finding the pain is impacting on your every day life, I would advise going back to see your doctor's, they maybe able to prescribe different pain relief whilst you wait for your tests.

Sending much love and warm hugs,
Karen x

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CharCharChar
Posts: 1
Joined: Sat Mar 03, 2018 6:16 pm

Re: 7 months post Methotrexate and still in pain?!?

Post by CharCharChar »

I'm going through this now. I was wondering if any of your tests showed anything? X

aeluned
Posts: 2
Joined: Mon Oct 10, 2016 11:30 am

Re: 7 months post Methotrexate and still in pain?!?

Post by aeluned »

Hi CharCharChar,

I’m so sorry to hear you are going through this! I’m sending you a massive hug!

I finally a diagnosis of sorts last week! My Laparoscopy last year was normal, but after that I’ve had an MRI of the Lumbar Spine, SI joints and Pelvis. The Pelvic MRI showed a few things which tied in with my symptoms. We also found out earlier this year I have overactive pelvic floor muscles.

From the pelvic MRI and having an overactive pelvic floor they’ve determined I have an unstable pelvis following pregnancy. I think they’re officially calling it Chronic Pelvic Girdle Pain.

Have you had any tests yet?xx

bsteven7
Posts: 1
Joined: Tue Nov 22, 2022 12:57 am

Re: 7 months post Methotrexate and still in pain?!?

Post by bsteven7 »

Hi aeluned,

I know you wrote this a while ago and may not respond but my experience is almost identical to yours and I am just looking for support. It’s been 4 months of pain, I had MTX on 05/10/22 and pregnancy resolved on 18/10/22 but I stick have right sided pain in my lower abdomen, hip, lower back and sometimes groin/leg. It’s every day and gets worse with movement. My ultrasounds, MRI and HSG all came back normal though, no cysts, open tubes, no abnormalities according to my pelvic MRI. I was wondering if you could share more about what was seen in your MRI that aligned with the pain? And has the pelvic floor therapy helped? I started going and haven’t noticed a different but maybe my pelvic floor is overactive too. I don’t know but I am at my wits end and losing my mind. It’s been such a hard few month. Any advice would help.

Thanks ♥️

Bribristorm
Posts: 1
Joined: Mon Sep 04, 2023 2:20 pm

Re: 7 months post Methotrexate and still in pain?!?

Post by Bribristorm »

Hi bsteven7,

I am wondering if and when your pain subsided? I am 5 weeks post mtx with hcg levels at 56. I am hoping this is the last week until it’s considered resolved. I have been experiencing ongoing pain in my left hip/pelvic region for 2 weeks now but my ultrasound is coming back clear. I can only imagine feeling this type of pain for months 😔
Thanks!

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